Month: April 2015

Forced to look at my own mortality again. It never gets easier. Everyone knows that but then I wonder how many my age have really had to face their own mortality? Many my age on here sure but in my day to day life I don’t think so. It is one thing to see something happen and think ‘that could have been me’ but quite another to think ‘if I don’t do X they best measuring me for my coffin’ or ‘I have that illness….shit.’ And when you have a chronic illness like diabetes, a chronic failure of your organ, it is very hard to think rationally.

My aunt has been diabetic fifty-four out of her fifty-eight years. There were no blood testing kits when she was born and no home urine testing either. There was only how she felt in herself and the HBA1C results to go on. In time a urine test appeared but it told you the story of an hour ago and told you only two things ‘good’ or ‘bad. Good could be 5.0 or it could be 12.1. Bad could be 13 or 30. All the test did was change colour. You dropped a tablet into your urine and the water either turned red (bad) or blue (good) and as usual people never got the number of these they needed to make them any proper use. Her injections look like torture devices to us now and there was no such thing as disposable. No you boiled your syringe each time and when it got blunt sharpened it with that fancy looking medieval torture device kit. You could not inject in children’s arms back then. The needle was so large you were likely to hit something you couldn’t or worse, come out the other side. Everything was weighed and counted and timed. It is no wonder my aunt had some rebellious teenage years but even as those monstrosities were replaced with the disposable needles we are familiar with today it did not mean instant control. Blood kits in the UK went to those really struggling even when they became more common elsewhere. My own mother never received one until I was diagnosed myself in 1997. That was nineteen years after her own diagnosis.

My aunt has always tried her best to live a normal life and have the best control she could but she is very sensitive to insulin and in the days before half units were possible and insulin pumps were a daydream, there was very little she could do to stem the tide. She tried everything. She was part of the trial for diabetic watches in the 90s which were meant to beep if you were going hypo. As it happens they freaked out if you got near a saucepan that was too hot. Neuropathy crept in and turned her hands from hers to almost claw like versions of the past. She can hardly feel them anymore. Still, she fought on. She tried every routine and every insulin and slowly scraped her away towards a good HBA1C over the years and chased it back if it escaped her.

Still, time hit hard. Full time work turned to part time. Part time turned to shifts built around avoiding the mornings her diabetes could be most out of control. Her thyroid gave up. Her life slowed down. Now it has dealt another blow, the blow that threatens to be final. Her blood pressure is now critically high and she has been diangosed with chronic kidney disease. Her kidney function sits at a dangerous 25%. She is looking to take medical retirement and is now on a cocktail of medication to try and keep things stable. She is optimistic but her Doctor is cautious. He has already brought up transplants but half the family is taken out of the equation by also being type one diabetic. It could be a long way down the road and it could be next year. It all depends on how her body reacts to her treatment.

I too have done everything I can to wrestle this organ failure into submission, after a few rocky years, and still I have one of the most hard to deal with complications in my dawn phenomenon. There was nothing I could do to stop that yet it put me on the sidelines for two and a half years anyway. I could do everything right and still have my organs give up. My thyroid gland already has. The statistics all say the same scary things, that diabetes will lead to more autoimmune illnesses, that we are more prone to organ failure and a whole host of diseases, depression, anxiety and generally get a rather shit set of cards in life. As I’ve stated before, diabetes just does not kill us quickly enough for people to take notice and help. We get a fraction of help that other illnesses do despite our organ failing. I now make that point to everyone who asks about my illness. I say ‘I have chronic organ failure, type one diabetes’ because that is what it is.

This all feels too close to home. Another organ has failed my aunt. It could be me. It could be my mother or one of my uncles. It is coming and there is only so much we can do to stop it. That is terrifying.

Agree with everything said in this article. I would add that a lot of pharmaceutical companies also try to find cures for the illnesses they make money out of treating. They are not the big evil in the world.

A friend posts an article on Facebook about how the United States’ medical system does not meet the needs of those with chronic pain. This is a reality that I have experienced. This is a reality that I regularly speak to others who experience chronic pain have also experienced. About a month ago when I was at the doctor’s office for my annual exam, I overheard 2 medical workers talking about how they hate when patients say they’re in pain, because they know they’re over-reacting. I was horrified, but it wasn’t the first time I’d heard someone in the medical field say something like this.

When we talk about chronic pain, and disability in general, inevitably someone pops up to say something like the following:

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach. Putting our faith completely in the medical system…